Record Detail

Providers and patients are considering and pursuing
PGD for ever-more conditions, but questions arise concerning
how they make, view and experience these decisions, and what
challenges they may face. Thirty-seven in-depth semi-
structured interviews were conducted (with 27 IVF providers
and 10 patients). Patients and providers struggled with chal-
lenges and dilemmas about whether to pursue PGD in specific
cases, and how to decide. Respondents varied in how they
viewed, experienced and made these choices, and for which
conditions to pursue PGD (from lethal, childhood-onset condi-
tions to milder, treatable, or adult-onset disorders). Several fac-
tors were involved, including differences in gene penetrance,
predictability, and phenotypic expression, and disease severity,
age of onset, treatability, stigma and degree of disability.
Providers and patients face questions regarding possibilities of
screening for more than one condition in one set of embryos,
and limitations of PGD (e.g., inaccurate results). Characteristics
of providers (e.g., amount of PGD experience, understandings
of genetics, and use of genetic counselors), and of patients (e.g.,
related to broader moral and social attitudes) can also affect
these decisions. These data, the first to examine several key
questions concerning PGD, suggest that providers and patients
confront several dilemmas. These findings have critical impli-
cations for future practice, guidelines, education and research.